It’s 461days ATN and 61days since the surgery to reverse the ileostomy.
I know I know it’s been a long time since the last post. Some of you have been wondering if I’m alive. A couple times I’ve been tempted to reply, “No. Do you have any burning questions about the afterlife? It’s not all that different. The Starbucks baristas still have problems getting orders for a venti-skinny-mocha-no-foam-no-whip-dash-of-cinnamon right.” (Actually I’ve limited my orders from Starbucks to teas since the first surgery since milk could have an unfortunate effect on my already challenged gastrointestinal tract. But I’m fairly sure when I eventually do order a mocha again what will
The good news is that recovery is progressing well, if slowly. While for chemo, radiation, and the first surgery progress could be seen day by day, for this second surgery the progress is noticeable week by week. This was a bit worrisome at first since I wasn’t sure any progress was happening at all. But after a few weeks the progress became evident. There are good days and bad days but the number of good days seem to be slowly increasing.
The clearest sign of recovery is that I’ve been waking up later. Yes, my vampire genes are starting to reassert themselves! Imagine my surprise when I woke up one day not at 8:30, or 9:00, or 9:30, but 11:00! There are still days when I wake up for no good reason at 8:30 or 9:30. But definite progress!
The Slow Road To Recovery
Looking back, the recovery started picking up speed two to three weeks ago. To put things into perspective there are two aspects to the recovery. One is the recovery from the surgery proper. The most visible part of that is the wound where the stoma used to be, which took more than a month and a half to heal. Arguably its not 100% healed yet but at least it’s closed.
My surgeon said that this wound was sutured/stapled but otherwise left open. The other surgical wounds were dressed with some sort of liquid bandage/stitches. My surgeon said that this wasn’t done with the stoma wound since it wasn’t a clean wound to begin with and by leaving it open it could drain if needed. When I left the hospital it looked like any other largish wound – it was covered by a crusted layer of blood, which the surgeon said would eventually come off on its own when the area beneath it had healed. There’d be some bleeding around the crust now and then and at the hospital it was kept covered with gauze. I was told to keep doing that at home to protect shirts. Unless they happened to be crimson already in which case I could do whatever I wanted. (Sadly I only have one crimson shirt so had to buy a bunch of gauze).
In addition to the bleeding the area around the stoma site was generally uncomfortable and there was a large bulge above the wound. I’m still not sure what that bulge was and at one time asked my surgeon if there was something in there. Like maybe a bag of M&M’s (I’d given him some when I saw him right before surgery, so you never know…) He assured me that aside from the packing (which was elastic cord material and not M&M’s, which he ate), there shouldn’t be anything left in my abdomen. I was a bit skeptical but looking back on it, it’s very likely this was inflamed abdominal muscle that was taking its own time to heal. In addition to all that it would often feel like my intestines were going to fall out. (My large intestines probably wanted to in protest of having to work again.) It wasn’t uncommon to see me walking/lurching around with one hand pressed to my abdomen. Just in case my guts decided to make a run for it.
What I wasn’t told was that this could go on for a month without any noticeable change in the wound. What happened was that after three to four weeks the crusted over area rapidly started getting smaller. Eventually most of it was off and it became clear that the wound was closing. Also around that time a noticed a couple of wires sticking up from the skin. These were maybe 2mm long and at first I thought they were hair. They would get caught on my shirt and I could feel whatever the wire was connected to getting tugged. After about a week of this I was going to ask my surgeon what was going on, when all of a sudden while showering I felt a pop and one of the wires came out. Actually there was two or three mm (that’s millimeters not candies) of wire-like stuff attached to maybe a cm of what looked like thread. I guess it was a self-dissolving suture, but the part that was sticking out didn’t dissolve. After that event things started to feel better faster and the inflammation around the area started to subside as well. Today, two months after surgery, the area still feels uncomfortable at times. But things are a lot better than they were just a few weeks ago.
The second aspect of recovery has to do with restarting the colon, which as my surgeon put it had been on sabbatical for three months while I had the ileostomy. Apparently much like professionals who go on sabbatical colons aren’t so thrilled with returning to work. In addition there’s the (still ongoing) question of how things will work with a good portion of my rectum missing. My surgeon reminded me that the rectum, in addition to pushing things out, also has a bit of expansion capacity which allows you to hold things in.
Those of you who read the previous post know that the whole restarting of the large intestine/colon is a challenge. You end up needing to go to the bathroom frequently at night so it’s difficult to get rest as well. When I discussed this with my surgeon he recommended psyllium husk fiber supplements (aka Metamucil). I was a bit surprised since I was on a low fiber diet while the reconnected intestines healed, but he said that I need to avoid the roughage type of bulk fiber and psyllium husk is bulk forming and ok. Basically it would help with the diarrhea and soft stools and make things more regular. He also said that it could also help with constipation. I told him I’d go to Costco that afternoon and get some he said, “Oh that one’s great!” Apparently he takes it daily for its health benefits. And I was surprised to learn that it “helps lower cholesterol to promote heart health” and “helps maintain healthy blood sugar levels” as well as “promotes digestive health.” Maybe add to that list “promotes healthy sleep cycles for the nocturnally inclined”?
The psyllium husk fiber wasn’t a 100% cure-all but it did seem to help, and maybe allowed my GI tract to ease back into work mode after its sabbatical. Things are coming along and I feel safe leaving home for two to three hours at a time.
Daruma-san Gets His Second Eye
While I’m still dealing with the fallout from cancer treatment (which in addition to the post-surgery stuff just mentioned also includes peripheral neuropathy, though its possible that may have come from the Pfizer COVID booster), I’m strictly speaking “done” with the formal treatment plan. And strictly speaking I’m in remission and most likely cancer free. (There’s this question about a lump on my shoulder that a nurse practitioner declared an epidermoid cyst but my medical oncologist wants looked at by a dermatologist…. It’ll get checked out right before thanksgiving so stay tuned for that update…)
But I figured it was time to give Daruma-san his second eye. He’s been staring at me for the past year or so from a shelf in my office wondering if he’d ever have stereo vision. So last weekend JT and I got together for a mini-celebration and penned in his right pupil.
Apparently he’s now supposed to be offered to a temple where he’ll be ritually burned. I’ll have to see if the Mountain View Buddhist Temple does any Daruma cremations. Or maybe I’ll just let him hang out in my office for a while.